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The cancer reporting protocols from the College of American Pathologists are available in structured format (1). No major laboratory information system vendor p
by killjoywashere 2y ago
The cancer reporting protocols from the College of American Pathologists are available in structured format (1). No major laboratory information system vendor properly implements them, properly, and their implementation errors cause some not-insignificant problems with patient care (oncologists calling the lab asking for clarification, etc). This has pushed labs to make policies disallowing the use of those modules and individual pathologists reverting to their own non-portable templates in Word documents.
The medical information systems vendors are right up there with health insurance companies in terms of their investment in ensuring patient deaths. Ensuring. With an E.
(1) https://www.cap.org/protocols-and-guidelines/electronic-cancer-protocols https://www.cap.org/protocols-and-guidelines/electronic-canc...
- all2 2y ago> The medical information systems vendors are right up there with health insurance companies in terms of their investment in ensuring patient deaths. Ensuring. With an E. Can you expand on this?
- righthand 2y agoMedical information system vendors only care about making a profit, not implementing actual solutions. The discrepancies between systems can lead to bad information which can cost people their life.
- ethbr1 2y agoAs an analogy, imagine if the consequence of Oracle doing Oracle-as-usual things was worse medical outcomes. But they did them anyway for profit. That's basically medical information system vendors. The fact that the US hasn't pushed open source EMRs through CMS is insane. It's literally the perfect problem for an open solution.
- caboteria 2y agoIt's worse than that. VistA is a world-class open source EMR that the VA has been trying to kill for decades.
- nradov 2y agoVistA was useful in it's time but it's hardly world class anymore. There were fundamental problems with the platform stack and data model which made it effectively impossible to keep moving forward.
- prepend 2y agoI love open source EMRs, but has any major country adopted open source EMRs? I know OpenMRS exists but is mainly used within developing nations. The US has Vista, made by VA, and it is a beast and no one really wants to use it.
- jampekka 2y agoIf I understand correctly, Estonia made their own EMR/EHR from scratch. The government produced (and commissioned?) software is all open source. https://koodivaramu.eesti.ee/explore https://koodivaramu.eesti.ee/explore EMR software seems like something that shouldn't be that hard. It's fundamentally a CRUD. Sure, there's a lot of legacy to interface with, but medical software seems like a deeply dysfunctional and probably corrupt industry.
- prepend 2y agoIt’s a famous “should be easy” use case. I think this is wrong only because no one does it.
- jampekka 2y agoI'm sure there's a lot of work, but hundreds of millions per deployment is not justifiable. The Finnish EPIC deployment has cost almost a billion euros. Estonia's from-scratch system was reportedly about 10 million euros.
- PoignardAzur 2y agoI mean, you're attributing malice, but it could just be that reliably implementing the formats is a really really hard problem?
- TheAceOfHearts 2y agoHow about fixing the format? Something that is obviously broken and resulting in patient deaths should really be considered a top priority. It's either malice or masskve incompetence. If these protocols were open there would definitely be volunteers willing to help fix it.
- mort96 2y agoIncompetence at this level is intentional, it means someone doesn't think they'll see RoI from investing resources into improving it. Calling it malice is appropriate I feel.
- layer8 2y agoIf there is no ROI, investing further resources would be charity work. I don’t think it’s accurate to call a company not doing so malicious.
- WitCanStain 2y agoNot actively malicious perhaps, but prioritising profits over lives is evil. Either you take care to make sure the systems you sell lead to the best possible outcomes, or you get out of the sector.
- layer8 2y agoThe company not existing at all might be worse though? I think it’s too easy to make blanket judgments like that from the outside, and it would be the job of regulation to counteract adverse incentives in the field.
- 2y ago
- jjmarr 2y agoIt doesn't look like the XML data is freely accessible. If I could get access to this data as a random student on the internet, I'd love to create an open source tool that generates an interactive visualization.
- chpatrick 2y agoThe problem is that a bug could kill people.
- zo1 2y agoPeople could potentially properly implement them if they were open and available: "Contact the CAP for more information about licensing and using the CAP electronic Cancer Protocols for cancer reporting at your institution." This stinks of the same gate-keeping that places like NIST and ISO do, charging you for access to their "standards".
- fl0id 2y agoFor liability reasons alone, you cannot just have random people working on health/lab stuff and the requisite vendors have access to these standards.
- joshuaissac 2y agoAccording to what killjoywashere said, the vendors do not want to implement these standards. So if CAP wants the standards to be relevant, they should release them for random people to implement.
- prepend 2y agoAren’t all NIST standards free as they are a government body?